Taking part in research

What can you do to help with research?

Ataxia UK helps researchers to recruit people with ataxia to take part in trials or contribute to other research. Occasionally ‘normal’ volunteers who are not affected by ataxia are also required. A list of research projects in which you may be able to take part are posted here. These can include providing blood samples, completing questionnaires or taking part in treatment trials. In some cases participants are needed for natural history studies. These are important to collect information about the how the condition affects people and how it progresses over time, which is useful information when doing treatment trials.

In order to be kept informed of any opportunities to participate in research projects and trials it is important tojoin Ataxia UK. By telling us exactly what kind ofataxia you have been diagnosed with we can inform you of relevant opportunities, as some studies are focused on only one type of ataxia.

We are very grateful to all who volunteer to participate in such research studies. It woul be impossible for some of these studies to take place without this help. For further information on taking part in clinical trials, take a look at Genetic Alliance UK's FAQ's on Clinical Trials booklet.

Any researchers involved in ataxia studies requiring participants are welcome to contact Ataxia UK (research@ataxia.org.uk). All studies will need to have relevant Ethics Committee approvals in place and comply with best practice.

“ Carla and Adam Turner, parents to Eva, 4. Eva took part in a next generation sequencing research project

Thank you Ataxia UK! Your funding has meant we have successfully navigated the first step on our long and unknown journey. You have made a direct difference to our lives and for that we will always be grateful. Keep doing what you do: your funding makes a massive difference to ordinary families catapulted into an extraordinary life! ”

List of current opportunities to help with research:

A list of scientific and medical research projects currently looking for volunteers are listed below, divided by the type of ataxia that is being studied. There are also sometimes opportunities to take part in healthcare studies.

Specialist Ataxia Centres – These Centres are involved in a number of ongoing research studies. See here for further details:

Latest

I am raising money for a charity based in London that helps people suffering from a neurological condition called Ataxia. On the 25th November of this year I will be challenging myself by skydiving for the first time from over 10, 000ft.

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September 25th is International Ataxia Awareness Day. Having our inspirational member Darran Stanesby who suffers with the incurable disease Cerebral Ataxia with no NHS funded research due to the rarity of this condition we are 100% behind the Charity,with our Raise the Bar event.